Sometimes it feels like audiologists are from Mars and their patients are from Venus. Audiologists want to sell hearing aids, but people with hearing loss want complete hearing solutions. Audiologists have limited time to spend with each person, while consumers have a large number of questions. For audiologists, hearing loss is all in a day’s work, but for us, it is a life-altering and emotional experience.
How can we get the two groups on the same page in order to provide a more productive patient experience for both? I hope that by sharing my hearing loss journey, we can take steps towards doing just that.
My Hearing Loss Story
My hearing loss story began in my mid-20s when I was a graduate student. The school used only the case method, so class participation was key to your understanding and to your grade. Even so, when I arrived the first day of class, I was more nervous about being able to see the blackboard from my assigned seat in the last row of the amphitheater, than I was about hearing my fellow students.
My worry had been misplaced. Fairly quickly into the first semester, I began to miss things in class — a comment that was made under one’s breath or as an aside. Sometimes the class would erupt in laughter and I would be left looking around the room trying to figure out what had been said. My seatmate was growing weary of my repeated, “What did she say?”
I knew what the problem was. I was losing my hearing. My father developed hearing loss as a young adult, as did his mother. I was hoping it would skip my generation, but no such luck. I was entering a path from which there is no escape — and one that had destroyed my father’s happiness. I was scared.
I went to get my hearing tested. I don’t remember much about that first audiology appointment, other than the result — mild hearing loss. I was told it was too slight of a loss to do anything about, but that I should monitor it. I was relieved, and because it wasn’t too bad, I ignored it, preferring denial to action.
Two years later, I moved to New York City, began my career, got married and settled into a fulfilling professional and personal life. But as the years passed, I noticed that I was having trouble hearing in meetings and that there were certain clients at work and friends socially that I was starting to avoid — the ones I couldn’t hear well. It was time for another hearing test.
As I suspected, things had gotten worse and this time it was recommended that I try hearing aids. I was devastated. The stigma surrounding hearing loss had been very strong in my home growing up, such that my father eventually became isolated and withdrawn. This experience was impacting how I felt about getting hearing aids. I knew that I needed them, but wanted them to be as small as possible so that nobody would know.
Getting the hearing aid molds made was frightening. I had never put anything into my ears before, let alone filling them to the brim with a self-hardening gel. My audiologist was gentle, but it was painful. As the gel hardened forming the mold, all sound receded leaving only pressure and fullness. Was this how wearing hearing aids felt? I went home and cried.
I hated my hearing aids and avoided using them as much as possible. At work, I would sneak them in before an important meeting and rip them out as soon as possible thereafter. I always hoped the telltale squeal would not give me away.
As my hearing loss worsened, I needed to wear my hearing aids more and more, but sometimes I did and sometimes I didn’t. It was beginning to take a toll socially. For friends I could hear well, I was always available, but for the ones that I could not, I made excuses. I was following in my father’s footsteps of shame and isolation.
But then I had children of my own and everything changed. Since my hearing loss is genetic I worried that I might have passed it onto them. I didn’t want them to see me hiding my hearing loss and being embarrassed by it. I needed to teach them how to survive and thrive with a hearing loss, in case one or both of them developed the condition. I had to accept my hearing loss. So I did.
I started wearing my hearing aids all the time and working to educate my family and friends about how they could help me hear them better. Over time I began to request quieter tables at restaurants and to use captioning devices at the movies. Soon I grew bold and even rearranged the entire seating arrangement at last year’s Thanksgiving dinner table so I would have a more hearing-friendly seat. I refuse to let my hearing loss isolate me. It is hard work, but it is worth it.
Recently, I have turned to advocacy, joining the boards of two leading hearing organizations — Hearing Health Foundation and Hearing loss Association of America. I even started a blog, LivingWithHearingLoss.com, where I share my hearing loss journey and tips that I have found helpful along the way. I hope that by sharing my story, I can help others to live more comfortably with their own hearing loss.
My Audiologist Experiences
For most people, an audiologist is the first hearing care provider they see. This was the case for me. The tone and outcome of that first visit is critical in setting the individual down his or her hearing loss path.
I have visited 4 audiologists since that first appointment back in business school. Only one ever asked me about my lifestyle and what hearing situations were most important to me. Only one (a different one) tested my hearing with my hearing aids on to make sure they were working well for me.
None of the audiologists ever suggested I find a support group for hearing loss or provided information on scientific research being done in the area. My care was always transactional, focused on the purchase of a hearing aid rather than on solving my hearing loss problems. At least that is how it felt to me.
I do not mention this to complain, because I have done quite well with my hearing aids since accepting my hearing loss and have my audiologists to thank for a lot of that. I also do not want to minimize the effort and hard work of the audiologist community, but I do think it is important to provide the patient’s perspective.
My Audiologist Visit Wish List
What is it that hearing loss patients want from their audiologists? Each person may have a slightly different list, but here is mine. I hope audiologists will consider incorporating these suggestions into their patient care routines.
- Focus on the person, not the product. Each patient is unique and may have different priorities for what he or she wants and needs to hear more clearly. Taking the time to ask him about his life could uncover important information that leads to a better and more complete hearing recovery plan. Is he working? Perhaps a captioned phone would be helpful. Does he want to go to the theater? Be sure to include a T-coil in his aid. These small details can make quite a difference.
- Supply a written summary of the visit with detailed follow-up instructions. Your patient may be missing important details about her care but is embarrassed to ask you to repeat them. Ask her follow up questions to make sure she understands. A written summary is incredibly helpful. Ideally, this would include test results, what they mean, and a list of recommended action items for care. Providing a written summary does not need to be time consuming if you use a simple checklist format that is filled out real-time during the appointment. A written record may also cut down on follow-up calls for clarification by family members.
- Welcome us with open arms. It takes the average person 7-10 years to seek treatment. Don’t let your receptionist scare them away! Hearing loss holds such a stigma for many people. It can be heartbreaking to acknowledge it. Be sure that staff is welcoming, polite, and easy to understand over the phone.
- Offer a full range of product options. Hearing aids are not enough to restore communication in all circumstances. Stay up to date on innovations that can help your patients more successfully watch TV, attend a lecture, or enjoy a dinner out at a restaurant. Technology is changing rapidly and is very confusing for patients such that your guidance will be highly valued. You might consider hosting small technology classes after hours on occasion to see if they are well attended.
- Think outside the device. Hearing loss impacts people’s lives in so many ways. Hearing aids and other devices alone are not always sufficient to restore one’s life back to “normal.” Provide information in your waiting area or on your written summary sheet about local support groups like Hearing Loss Association of America. Stay up on hearing loss research that you can share with your patients. If you treat the whole person, they will send their friends your way.
- Make your office hearing loss friendly. Is your reception area looped? Do you provide written instructions for payment and other functions in addition to verbal explanations? Does your receptionist speak slowly and clearly while looking at the patient? Patients are here because they cannot hear well. Make sure your office resonates with respect for their condition.
- Understand that hearing loss is fraught with emotion. Acknowledging and treating one’s hearing loss is a big step for many people. Compliment your client for taking charge of his hearing and taking steps to enable a more connected life. Encourage him to continue along the journey with a positive and can-do attitude. Your compassion will go a long way to ensuring that the hearing aids don’t end up in a drawer unused.
- Set realistic expectations. When I first got my hearing aids I expected them to solve all my hearing problems right away, and of course, they did not. It takes persistence and work to fine-tune the settings and to retrain the brain to hear in this new way. Be sure to set realistic expectations and explain the work and time that will be required by both the audiologist and by the hearing aid wearer to get things working smoothly.
- Share tips and tricks of the trade. Those new to hearing loss may not understand how to ask others to help them hear better. Share some of your secrets. While tips like getting the attention of the person first, and keeping the mouth visible are obvious to you, they may not be to someone new to hearing loss or to his family and friends. Perhaps your favorite tips could be printed on the back of your appointment summary sheet.
Readers, what is on your audiologist visit wish list?
This article originally appeared in Audiology Practices’ June 2016 issue. It is reproduced here with permission.
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Another item for the wish list could be to invite my significant other, roommate, spouse, someone close to me to join us in part of that interview. I have a lifelong hearing loss and one audiologist long ago had a questionnaire that was sent to my husband so he had a chance to explain which situations he found difficult with my hearing loss. I found out things through that questionnaire that I had not realized were problems for others, so we worked to include those in fitting my hearing aids too.
Good idea. Thanks Mary!
Couldn’t agree more. But the real question is how to get audiologists to adopt a patient centered approach. Some do. But many seem to feel that that selling hearing aids is all they need to be concerned about. Some have relationships with one or two HA manufacturers and, not surprisingly, recommend their products to patients. Is that a conflict of interest. Legally, maybe not. IMO it is. What is clearly needed is a different business model, one that makes it remunerative for the audiologist to focus on the unique needs of the individual.
Great points. Thanks for sharing your views.
To answer the question, “Are audiologists from Mars?” My answer is no! They are from another galaxy! OK, I got that out of my system. I’ll settle down a bit.
Great post Shari. This needed to be said by someone who will be heard. Thank you.
I have had 4 audiologists over the past 20 years. The first 3 were for a short period in the same office, then I moved to the Portland area and had the same audiologist for about 18 years. I naively believed he was telling me everything I needed to know for my hearing health and experience. Not one word about assistive listening devices, T-coils, audio loops, hearing rehab resources or anything except the latest multi-chanel high powered hearing aid that would make my listening life wonderful. Not once did he mention a medical evaluation or the possibility of a CI.
During this period I decided to Google “hearing loss” and my life was turned around! I was angry and embarrassed as well feeling like an idiot for not being my own advocate. I actually thought my audiologist was telling me everything I needed to know. I finally asked him why he didn’t introduce T-coil and loop technology to his clients he said, and I quote: “There is no money in that for me”.
I called my PCP and asked for a medical evaluation of my hearing health and a new audiogram to be made to see if I qualified for a CI. I was told that I was well qualified for a CI and was referred to Tufts Medical Canter in Boston where I was implanted on May 6 this year.
I am now two and a half months post activation and doing quite well in rehab. My current audiologist is based ini a teaching hospital and does not sell hearing aids. She is mostly concerned with my hearing health and experience. She is from Venus.
So glad you googled to get the information you needed! It should not have to be that way though. Thanks for sharing your experiences
Nice post! I often think audiologists don’t want people to know their expensive product is flawed and won’t provide perfect hearing. I know for years I thought something was wrong with me because my hearing aids didn’t help in many situations which added to my shame. Finding out the limits of hearing aids was a relief and helped me to be more aware, advocating for myself. I wonder how many people put their hearing aids in drawers thinking something is wrong with them? I would think it would help audiologists and patients if they were directed to support groups, after all, we aren’t going to trash the product we all use and count on in spite of it not reproducing perfect hearing. After over 25 years of wearing aids, no audiologist ever recommended ALDs to me either but vocational rehab in Arizona did along with support groups. ALDs are my favorite times to wear hearing aids these days. Things need to change and you summed it up well.
Thanks for sharing your perspective. It is so important to talk about these issues.
Awesome post Shari;
It continues to AMAZE me how many hearing clinics are NOT looped. Looping a waiting room is a simple and relatively in-expensive exercise.
ALD’s can be a huge help for people with their daily living needs beyond hearing aids, yet we too often hear from people that their HIP, HAP, Audiologist, ETC never mentions ALD’s and how beneficial they can be. Alarm Clocks with bed shaker, telephones with flashing lights and extra loud ringers, door bell notification systems, baby cry monitors, smoke and CO2 notification systems. So many products that can assist people with hearing loss.
Yet too many times people are just “sold” a hearing aid instead of their whole daily living requirements being taken into account.
So true – ALDs can make a huge difference in our day to day life, but only if we know they are available. Thanks for sharing your thoughts.
Such an important issue, Shari. Thank you for writing about it.
Audiologists are increasingly on the ropes as options for buying hearing aids (or hearing aid like devices) open up. Costco and the other big box stores can provide simple aids for those with age-related hearing loss. PSAP’s work for many with simple mild to moderate hearing loss.
You and I and others with complicated hearing loss need audiologists who earn their living not just from selling hearing aids but from providing services. These include auditory rehabilitation, expertise in the areas of assistive listening devices, knowledge about telecoils, a loop installed in their office so they can demonstrate how they work.
All these take time, but if the run of the mill patient with simple hearing loss starts bypassing audiologists, they’re going to have time, plenty of it. They need to develop a new business model — with you and me as the patients.
I went to a four-day training session on auditory rehab for graduate students in audiology last week. It’s the subject of my post this week (coming out Weds or Thursday). It was an amazing experience. The audiologists were fantastic!
I would like to add that I’ve always had good audiologists, maybe because I refuse to settle for less. It’s time consuming to find one, but they are out there. What a difference it makes.
Sounds like a very interesting training. I am looking forward to reading your post about it.
Great article. HLAA is a great group, but isn’t available in many places. I would strongly encourage audiologists, doctors, educators and many others like churches, schools, families and communities to educate themselves and to visit a local chapter of HLAA and other groups and get as much information as they can and to also mingle with as many as they can in that group. I saw on tv when a deaf person was shot and killed by a state trooper. Thanks for sharing the information and keep up with the good work.
Great suggestion. Thanks for sharing your ideas.
Reblogged this on One Woman's Choice.
What a fantastic article, I feel a bit gutted as an audiologist that we don’t always get things right, but have printed your wish list out to discuss with our team about how we can improve what we do! There are some great ideas there, some that I wouldn’t have thought about but make complete sense! Thanks for your amazing insight!
Thanks so much for considering these ideas and putting them into practice!
Different tests are for different types of hearing loss. My first audiologist gave me a test for people with nerve damage, which I don’t have. I couldn’t hear anything, and was mortified for nothing.
Sorry you had to go through that. Thanks for sharing your experience.
One thing with me is, I’m one of those really curious people. If I’m interested in something, I’ll ask a lot of questions. I was diagnosed with (mild/40 dB low frequency) hearing loss when I was 7, and had a second hearing test when I was 14. However, it didn’t really intrigue me until about 14 and a half months ago when I was almost 18, which was when I had my third ever hearing test. I didn’t think of questions until I got home. But, once I started thinking of questions, I kept looking up stuff which just led to more questions and basically I’ve been on-and-off a Googling Random Hearing Loss Stuff binge for the last year or so… Although to be fair I’ve actually answered a couple of my most pressing questions this way. 🙂
Also, when I was first diagnosed, the audiologist recommended that we not get hearing aids because he (she? I don’t remember, lol…) said it might pose a social stigma with other kids. Now, I’m all for avoiding bullying… but to tell parents not to get something that might help their child just because other kids might think it was weird… Besides, I’ve never been bullied for my glasses, so… Apparently the kids I was hanging out with weren’t a problem in that regard.
When I had my hearing tested again at 14, my dad decided (out of parental curiosity) to simulate my audiogram at home by running a few songs through a media processor with my audiogram settings (or something like that). Suffice it to say, once he listened and heard the difference between how he hears those songs and how I hear those songs, he immediately decided he was for getting me hearing aids. Unfortunately our funds haven’t exactly worked towards that goal yet… But the point is, I don’t think the audiologist ran any sort of simulation or anything to explain how I hear. And I think that’s an important part of understanding hearing loss. I have since downloaded a hearing loss simulator onto my laptop, so I can explain to people how I hear.
So basically, that’s three things I wish audiologists would do: 1. be able/willing/accessible to answer questions about hearing loss EVEN IF YOUR PATIENT IS A CHILD OR TEEN; 2. even if the loss is mild enough to consider not needing HA’s, maybe give options for other ways to help? I didn’t even know FM systems existed until a year ago; 3. use simulation technology to show normally-hearing relatives of the HOH person how they hear; it will give them a totally different perspective on it
🙂
EDG.
Great ideas! Thanks for sharing them and your experiences. Good luck to you as you continue on your hearing loss journey.
What an interesting comment. And how horrifying that even in our enlightened age an audiologist would tell someone not to get hearing aids because of the stigma.
Can you post a url for the hearing loss simulator?
Umm… yeah, sure. Keep in mind you have to download it, though…
Here, this page has a link to the website where you can download the NIOSH simulator, and also gives other websites where there are some pre-programmed HL simulations: http://hearinglosshelp.com/blog/hearing-loss-simulators/
Hope this is useful. 🙂
I go to an audiologist in a respected university hospital and I’m very happy with her. However I’m constantly amazed how unaware many in the office are that some of us can’t hear them easily. They walk in front of me to take me to the examining room talking pleasantly to me – and I haven’t the foggiest idea what they are saying. As soon as we get in the room, I explain to them how bad my hearing is.
This week I went to another large university hospital – and the audiologist had his head turned completely to me when he spoke to me. It was so unusual I commented on it to him – how much I appreciated his attempt to make sure he communicated to me. He said that was part of the job…..
The suggestion about looping is one I’ve always wondered about. why don’t doctors who deal with hearing impaired people have looped offices? It’s a quick and easy way to demonstrate how effective and helpful these are for us. If anyone has the responsibility to provide us with means to communicate it should be the doctors.
Great points. Thanks for sharing your experiences.
Thanks for sharing your experience. I am an audiologist and after reading your post ,I will try to do my best to apply patient center method.
Thanks for reading.
Thanks for explaining that it’s important to choose the right audiologist because they’ll be the ones who start the patient on their journey of hearing loss. My husband and I think his father might need to get hearing aids soon, so we need to find an audiologist to evaluate his hearing and take his ear measurements. I’m glad I read your article because you helped me see the importance of researching potential audiologists and making the decision with care.
Glad you found it helpful. Good luck to you and your family.